From ethical approval to an ethics of care: Considerations for the inclusion of older adults in ethnographic research from the perspective of a ‘humanisation of care framework’

Abstract

A deeper understanding of care demands the methodological finesse of qualitative research: we must observe, listen, and witness to expose what matters to care recipients. In this paper, we – a team of three: one early-career researcher and two supervisors – reflect on our experiences of designing and then seeking ethics approval for ethnographic research on care for older adults, many of whom demonstrate a lack of capacity to consent to research. Viewing experiences of well-being and dignity as embedded within interpersonal negotiations, this study privileges care home residents' daily life, looking to stories and observations of daily life to reveal the complexities of well-being in the care home setting. This paper emphasizes the importance of using qualitative research methods to gain a deeper understanding of care practices, particularly in the context of care for older adults with varying cognitive capacities. By privileging the daily life experiences of care home residents and employing the logic of process consent, we aim to include the voices of all participants, not just those who can provide written informed consent. However, obtaining ethics approval for this type of research presents several challenges, requiring careful negotiation and the inclusion of consultee advice. This paper highlights the tensions between procedural ethics and the need for better inclusion of vulnerable populations in ethnographic research on care. By addressing these challenges, we can move towards a more context-sensitive and humanised approach to research ethics that values the lived experiences of care recipients.